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It was a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation erupted behind my right eye. Then came rapid shocks, similar to electric shocks. As the school day came and went, the pain eased and then came back with greater intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-on agony in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks typically start with sudden, excruciating agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Historical medical records propose bizarre treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a calm advisor talked me through oxygen therapy and medication until the attack passed.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known individuals.

But leading specialists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Short bouts with infrequent attacks are managed with abortive treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a